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Friday, February 20, 2009

(Bump) Q&A

I thought I'd bump this and open the comments up one more time for our anonymous friends...I've already got A's to the Q's, but don't mind waiting a few more days if there are any other good Q's.

It's been a long time since I've done a Q&A, and since we've had some major events take place since that last one, I figured we're about due.

I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 35 times. I'd recommend that, before you ask a question, you use the "labels" feature over on the right of your screen, or look at the previous Q&A's to find out if your question has already been answered. I'll leave the comments open for several days to make sure everyone gets their questions in.

And, before you ask, YES, I'm going to post Gwyneth's 1 Year Birthday Video whenever I can find some time to finish putting it together...

96 comments:

Just curious about the gross motor skills such as walking with a micro-premmie?

I know the early milestones you work it from their due date rather than their actual birthday and as they get older they get closer to being on target with the milestones.Not to place any pressure on Gwyneth but as walking is something that normally comes around this age, I know some full term babies that don't walk until 15 months or older so it's not a certain thing that they walk at 1 but I was just curious as to when the dr's would start to expect these kinds of milestones

Hello. I wanted to first say that I came across your blog about a month ago. I was so interested in your story, that I literally started from the very beginning and am now through to the current daily posts. Definitely a lot to read but I really feel and see the hand of the Lord upon your lives.

My question is about Gwyneth. Is she rolling over or sitting up on her own yet? I have a 10 month old (today in fact!!) and am amazed at the things they do in literally one day's time.

Lastly, do you have a Bumbo chair for Gwyneth? Google it if you haven't. This is a life saver for you and her!!

You haven't updated us in quite awhile about how Tricia feels with her new lungs. I think a lot of CFers considering transplant are really interested in hearing about what kind of a difference it's made. Can she still breathe more easily? Does she feel better overall? Do her new lungs pose any daily challenges or does she not even have to think about them most days? Thanks!

I am curious as to Gwyneth's medical issues at this point, being a micro-preemie. Is she developmentally on target, and if not where is she about? Do the doctors give you any indication of future issues?

She is SO beautiful, as is Trish. That snow princess picture is great.

Moving is exhausting task under any conditions, but now that Triciais recovering from her monumental year of medical ups and downs, what is her energy level like? I also just want to wish your family a great healtly 2009!

Have you contacted Early Intervention (the birth to 3 program that provides free occupational, physical & speech therapy to developmentally-delayed children) to set up therapy for her or is she already getting it and it's something you have chosen not to talk about?

Does Gwyneth have any medical condition/complication associated with being a former micropreemie (like eye issues or cerebral palsy or something like that)?

Do you have nicknames for Gwyneth, or do you call her by her full first name? We swore up and down that our daughter would be Eliana, no nicknames. That lasted about two weeks. I'm also curious to know about her growth. Where does she fall on the growth percentile charts, either for her actual age or adjusted age? It took Eliana several months to get on the chart, actual or adjusted (only 2 weeks difference) and she still hovers between 5 and 10 percentile for weight. Thanks for being so open about your life with the blogging community. I look forward to reading your updates every morning. You're doing a great job raising awareness for the issues your family faces on a daily basis.

I think others have already asked the questions I'd like to see answered: how is Gwyneth doing developmentally, and does she have any long-term issues (other than her eyes, which we know about)? And how is Tricia these days - she looks very well in photos, but you can't always tell from them!

How has Tricia dealt with the fact that she was adopted? Was she adopted when she was an infant?

I was adopted when I was a few months shy of turning 5 years old. In my early and mid 20's (I'm 31 now) I had a really difficult time dealing with my adoption and whether or not to contact my biological parents. Now that I have a daughter it doesn't bother me as much. I think because I realize that through her I can gain back the first five years of my life by giving her the love I didn't have..if that makes sense!

I just wanted to send you a message of encouragement. I am seeing over and over the questions about Gwyneth's developmental progress. I don't know where you guys are emotionally with that stuff, but as I have been there/done that and told you several times before....(I am a mom who has CF and a child with special needs...) I just want you to know that Gwyneth is looking awesome. I pray that she is meeting her "milestones" that her doctors want to see. As a micro~ micro~~ micro~~ preemie, you can throw ALL of those 'What to expect in the First Year' books out the window. The only book that I find helpful today is the American Academy of Pediatrics handbook, so I know what to do if he gets some bizarre preschool cold or foreign rash, etc. lol Being an only child, I don't have a Janet or Megan to ring up...haha. By the way, WHERE IS Megan's sweatshirt? lol

Anyway, I just want to tell you that I firmly believe that all of us are somewhere on the MOVEABLE spectrum of totally disabled to genius in terms of our brain development. What does "Is your child on target?" mean, really? On target with what?

I remember the stress and pain of just 'recovering ' emotionally and 'getting our life back' that first year. Then as the diagnosis/delays/ and good news filtered in, it was easy to begin to stress over each and every milestone. From what I have read about you both, witnessed in your Faith, and enjoyed seeing your family support....I think you have far greater tools than we did to truly enjoy these months with Gwyneth and not spend sleepless nights every day she is 'delayed' doing something.

We heard everything....Oh, if he doesn't sit up by this time-- he might not walk , he's not tracking --he may not see, etc. It's all on God's schedule and it has taken us awhile to realize that.

Being a micro preemie with such exceptional care at Duke, I am certain that early intervention is in the cards. We soaked up and learned so much from our OT/PT and later speech therapist. We educated ourselves on special education laws for when our son transitioned at age 3 out of early intervention to preschool. The parent classes were invaluable in dealing with the underfunded school.

I guess I just have seen all these posts and I could hear all the nagging voices again in my head....it's just natural curiousity, but as a parent they made me feel so much PRESSURE to 'make it happen.' Again, you have better tools than I did and you have become accustomed to turning things over to God.

When I look back, I just have 2 pieces of unsolicited advice. 1) Enjoy every moment of hugging and just enjoying this age, this day, this minute. Take it One Day at a Time2) Use your intellect to find the right professionals--- whatever her needs might be. 3) Give God your emotions as well, Let Go and Let God.4) nacd.org neurodevelopment programs for all children----depending on where they are range of ability. "Organically injured children can become typical...typical children can become gifted, gifted children can become exceptional and they ALL can change the world." I have sat with a neurologist who told my money was better spent on a bass boat and had another tell me he couldn't deny the significant improvements in the children he saw.

I know Gwyneth has an adjusted age....what age is she at developmentally? What skills/milestones does she need to work on?

Now that Tricia has new lungs, what is life like? Does she still have the same respiratory CF symptoms? How does this change her life expectancy? On average, how long does a lung transplant for a CF'er last?

My question is one of morals/ethics. Knowing what you do about CF and everything you have gone through (especially Tricia and how it has affected her life from childhood to present), if you were both carriers of the CF gene, what would you do about having children? Would you leave it in God's hands and take your chances, knowing that every pregnancy would have a 1 in 4 chance of having a baby with CF, or would you choose in vitro fertilization with genetic pre-implantation screening to avoid having a child with CF and having to endure all that you have gone through?

Thanks for being willing to answer all our questions Nate! I have kind of a random one. I saw in the picture with Gwyneth and Uncle Frank that he was feeding her a small bottle. I am just curious as to how much Gwyneth eats at a feeding?

You've answered so many questions along the way...it's difficult to think of new ones!

As a mom of a child with a genetic mutation, I have a question concerning CF. I know you've said that Gwyneth doesn't have CF, but was that based on your negative test? Is CF a recessive gene? Just curious.

Beyond the lung transplant and lymphoma, how is Tricia's health?

Is your life back to anything resembling normal yet? I know there was lots of talk about not going to public places, both for Gwyneths and Tricias benefit. Has that changed yet?

Thanks so much for taking the time to do this, Nate and Tricia. You really do a huge service to the CF community, and so many others, with your openness and willing to educate. I just wanted to add my personal gratitude as a CFer.

Quick question: Does Tricia still get followed by her "regular" CF team at Duke or elsewhere? I know that one is assigned a transplant pulmonologist for transplant issues, but I was wondering how much involvement her original CF still has in her care?

I have a question about your house. I noticed that you have tile on your wall and your floor. From the video it looked to be 12x12. We had our bathrooms redone last March with 12x12 tiles on the wall and floor. Did your tile guy do anything special where the wall tile and floor tile meet? I mean other than just grout. We have just grout there and it is breaking away and I have no idea what is going on.

Strange question, but one I've been wanting to ask you since the video of your bathroom.

For the sake of CF'ers everywhere considering transplant. HOW do the new lungs feel? What's it like to BREATH? Was it immediate that you noticed a difference? Did it take time to build it up? Just curious? What are you noticing you can do know you could not before? Obviously, you got to a traumatic point where you had to do something (in the hospital on vent) , but PRIOR.....comparing to your life when you first started the evaluation process ~~ b4 you knew about Baby G on the way?

Also, is the transplant regimen worse to manage than the CF regimen? And how do you manage that regimen? Have you and Nate worked out a schedule?

Where is Gwyneth developmentally? Does she see an OT? How is Tricia functioning/feeling with her new lungs? Is she back to where she was say two years ago or better or worse?Where's the new house tour/pictures?Are you back to working 40 hrs? Is Tricia physically up to taking care of Gwyneth for 40+ hours a week when you're gone?Did Tricia's hair grow back in any differently than her hair was like before?Guess that's enough questions to choose from!!

I, like Zarna, would like to know more about Gwyneth's progress as far as what you've been told to expect her to do by different ages. I have a little one that is about ready to be 2, and know how she should be developing because she wasn't a micro-preemie. But, it would be kind of neat to see how much different it is for Gwyneth because of how early she was born. Is she progressing how the doctor's think she should be?? I love watching her grow. It's so fun, and it's awesome that you allow us to be a part of that!

Gwyneth is an adorable and alert baby who is showing some effects of preterm birth. I see that others have asked questions about her development, special needs, and treatment. Your blog is read by thousands of people, sharing details of your life and of course life with CF. I wonder how you are Tricia feel as parents about sharing information about your child's challenges with the public- where the boundaries are there and how you make such decisions. Do you wish to also educate others about preterm birth and associated conditions and expand your advocacy beyond CF and transplants, etc? I can imagine having mixed feelings...

Hi there!I'm kinda new here, I've never really commented, and only came a few months ago.

Has Tricia ever had a G-tube? How did she adjust to it? Might be a random..and kinda personal question. I have CF and I recently got one, and I am having a bit of a difficult time adjusting to it, hehe!

OH! I almost forgot. Any good weight gaining tips? hehe That's all for now. I really love your blog, and its really great to have somebody that's, a sorta...role model for me, having CF.

If you object to silly questions, then please just ignore this... I have a three year old pug named Fantango. Before her, I had a pug named Mango who lived to 12 years. They actually had quite different personalities, but one thing they absolutely had in common was that they would not let me cut their nails. Whenever I tried, they would fight until they were hyperventilating and in a panic! I have a new baby in the house and I don't like having vampire claws around the baby.

My question - does Meka let you cut her nails? Are there any tricks or secrets to getting a pug to let you cut her nails?

Isn't wonderful that you are so busy you have to find time to put the video together. Just a year ago you were sitting in a hospital with more than enough time to work on the computer. Life is wonderful! God is good!

Okay so my question goes back awhile...I am not sure if you answered it and I missed it, but I am going to ask it anyway....

I don't remember how long exactly, but I want to say it only took Tricia about three weeks to discharged after her lung transplant. To me that seems REALLY quickly, is that a normal time span, or quick?

Ok I;ve got one...for the pseudomonas thats found in Tricia's lungs- does she had to to IV tobi or inhaled or what is she on for that? I know its a common CF bug...but in the above blog you said its common with most chronic lung dieases...so I learned something new today- thanks!

Hi Nate,Thanks for opening up the comments again. I can never figure out how to get that blogger acct to post here.I was wondering if Gwyneth is totally off oxygen now as I haven't noticed it in any recent photos? What kind of diet is she on now? Regular milk yet? and any foods? what foods does she like so far? or hate? :-)You mentioned once that she had some vision issues. Can she see at all now, or just limited? Will she need glasses and if so when will she get them? (She will look so cute with them!)Well, thanks for answering the questions. She is just tooooo friggin adorable for words! I bet you can't wait till the warmer weather to have more fun with her!

Is gwyneth still considered at risk for RSV? Did she get the shot for RSV this year? I notice you and tricia do take her around to alot of public places including hospital waiting rooms and I was curious cause our daughter's pedi specifically told us to keep our preemie on "rsv lockdown" till april. we were told absolutely no public places including hospitals and waiting rooms. just curious if your docs advised same things.

also was wondering how tricia is doing post transplant. does she see a huge difference breathing now with new lungs? does she still need to take CF digestive enzymes with meals? she looks great and so healthy!

How long will Tricia's new lungs last? Does she have to get new ones every few years? Do they eventually fill up again with that thick mucus like her old lungs? I still pray for her. She is so sweet looking. I am so happy she has her baby girl (even though she looks just like you hehe)

I have been wondering just recently about Tricia. After her transplant you had said that she couldn't stand to drink cranberry juice anymore even though she lived on it. Is this still true? Can she no longer drink it or has been able to wash it down? Curious!! =)

Did you know you are one of my favorite blogs? I have never commented before and don't even have an ID. But I wanted to take a minuted to tell you how much I enjoy watching you be a devoted father and husband.

Your story is beautiful and you tell it with such love - I can't help but be inspired!

Gwyneth is so perfectly wonderful!!! I just love that you share her beautiful face and sweet personality with your readers.

What do you tell yourself when you get insensitive comments?

Do you have topics that are 'off limits' or that you naturally gravitate away from when you write on your blog?

Just wondering if you have been able to get out and about on the Outer banks yet. I saw pictures from Manteo but i read that you were staying aout a crowds for a while but I did not know if you all had more freedom now that Tricia and Gwyneth are getting so healthy and strong. One toher questions about Tricia, do all normal alergins effect her breathing like dust, pollen, ragweed, dander etc or is that just if she has those alergies. I notice you have a dog and cat and I was just wondering what kind of airborne polluntiants are really bad for her more than the rest of us.

Thank you for sharing your story and opening your blog for my comments.

We had a son 4yrs ago that weighed only 1lb and 14 oz. To answer everyones questions about developement I can tell you this. These children are all angels of God and in there own time each make progress in a different way. There is no normal progress for these children. Do not worry yourself with what is normal but focus only on the progress your child is making. Your little girl is a gift just like our son and God has a plan for them. No one understands what it is like to have a premie until it happens to them. It is not about getting them to be "normal" it is about being so thankful they are alive and helping them to be the best they can be. I can see you and your wife feel this way and I thought this might help answer others questions. She is alive, she is loved and she makes this world a better place.We do not compare our son to other 4yr olds. We think he is perfect just the way God made him

Yay! I can ask a question. I am a graduate student studying to become a speech pathologist and I'm wondering what Gwyneth's verbalizations are like now? Is she receiving any speech therapy? Early intervention is fantastic!

How is it sleeping under your own roof with the ladies of your life and seeing the sun rise on their beautiful faces? What has been the sweetest moment since you have been in the new house? Do you feel you have less privacy even in the new place because of the public aspect of the blogs you and Tricia write?

Why is there so much pressure onbabies development today?Gwyneth is precious and I'm suremom and dad and her doctors knowwhat they are doing.I have 2 teenage boys who wereborn full term at 8 lbs.My second son never sat until 9 mths. Nobody ever discussed his development. Today I would feelalot more pressure for him to doeverything early. If he wouldhave been born early like Gwynethimagine the pressure I would beunder today!My question: Nate do you feelthat there is pressure forGwyneth to meet milestones?

This is the third time you've asked for questions! I think People are repeating their questions again in case you skip them in the first two rounds...Many readers want to know about Gwyneth's challenges if you feel comfortable sharing. If not (and thats understandable) perhaps a post about that issue- how a (blogging) parent of a special needs child feels about divulging information to the public. It's an interesting "current" issue.

I've followed your story over the past year, thanks for sharing your lives. I am in the medical field and was interested in all the updates regarding the pregnancy/preemie/transplant issues but now I enjoy reading about the "normal" happy family life. You have all come such a long way and I am honored that I was able to read along the journey with you. Thanks.

Any regrets about blogging such a personal story? If you knew what this was going to turn into would you have changed anything? Are you going to continue forever? :)

I'd just like to say that I think Mary's calendar idea is wonderful- what a great fundraiser! Also, I too am wondering about Jeff. I remember there was a lot of blogging going on about a fundraiser for him, and then suddenly everyone stopped talking about him and Janet stopped blogging, so I was worried something happened. Can you update us?

Start Here

If you are new to the Confessions Of A CF Husband Blog, and you don't have several hours to read every post, you may want to get to know us quickly by Reading This First.

Meet The cfhusband

My name is Nathan. My wife, Tricia has Cystic Fibrosis (CF) and had been preparing for a double lung transplant until we discovered we were pregnant. Surviving a premature birth, double lung transplant and lymphoma is just the beginning of our story.Tricia is the most incredible person I've ever met. She keeps me humble and in love.Gwyneth is our beautiful daughter, born 15+ weeks early, weighing just 1lb 6oz.Tricia is now breathing with the help of donated lungs, and Gwyneth is on her way out of the NICU and into our hearts.This is our story from my perspective...